Episode 427: Endo Uncovered Part 2: Rachel’s Stage 4 Endometriosis Diagnosis & the Surgery That Changed Everything
Listen on Apple Podcasts | Listen on Spotify
We’re back with Part 2 of the endometriosis series, and this one is personal.
Lead practitioner Rachel Heintz shares her own story with stage 4 deep infiltrating endometriosis. You’ll hear about the symptoms she didn’t realize were clues, the functional work that helped her feel dramatically better, and the surgery that revealed just how severe things really were.
Rachel walks through her timeline: going on birth control for acne, coming off the pill and experiencing debilitating periods, dealing with extreme allergies and histamine issues, living in a moldy apartment, and eventually discovering endometriosis in a pretty unusual location.
Erin and Rachel talk about why surgery is not a failure, why not every OB/GYN is an endometriosis expert, why getting another opinion can matter so much, and what Rachel’s excision surgery ultimately revealed.
In this episode:
How birth control may have masked Rachel’s endo symptoms for years after she originally started it for acne
Why Rachel believes mold exposure in a damp college apartment may have been a major immune and mast cell trigger
Why untreated endo could have created bigger issues for Rachel’s bowels, kidneys, appendix, fertility, and overall health
How Rachel is feeling 10 weeks post-op, with a smoother-than-expected recovery
Resources mentioned:
Enrollment for the Fall 2026 cohort of The Funk’tional Nutrition Academy is now open! If you’re ready to become a certified functional health practitioner, apply now.
Apply for 1:1 Endometriosis Support here if you’re navigating painful periods, suspected or diagnosed endometriosis, gut symptoms, hormone issues, or inflammation.
Order The Gut Panel to uncover the hidden root causes behind your “mystery” symptoms.
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Rachel:
When estrogen levels rise, histamine levels rise. And, as histamine levels rise, estrogen rises. It's kind of like chicken or the egg. And, we also know that endometriosis can be driven by and exacerbated by estrogen. And, mast cells, they're part of your immune system. They're the part of your immune system that produces histamines. And, endometriosis lesions and endometriosis tissue, it contains its own mast cells and it produces its own estrogen and it produces its own histamine. So it’s kind of like more histamines, more estrogens, all of that going on.
Welcome to the Funk’tional Nutrition Podcast, spelled with a K, because we do things a little differently around here. I'm your host, Erin Holt, and I've got 15 years of clinical experience as a functional nutritionist and mindset coach, creating a new model that I call Intuitive Functional Medicine™, where we combine root cause medicine with the innate intelligence of your body. This is where science meets self-trust. Your body already knows how to heal, and this show is going to show you how. If you're looking for new ways of thinking about your health, be sure to follow and share with a friend because you never know whose life you might change.
Erin Holt:
All right guys, welcome back to the show. Today is gonna be part 2 in our series on painful periods and endometriosis. If you haven't listened to part 1 yet, be sure to go back to last week's episode and start there first. Last week we broke down what is normal versus what is not normal for period pain. We talked about what endometriosis actually is. We talked about the signs and the symptoms that point to it, including some of the more obscure ones that you wouldn't necessarily think about. And then we also talked about how we work up and address painful periods and endometriosis here at The Funk’tional Nutritionist. We also got real about diagnosis.
Right now, surgery is still the only way to confirm it. However, there is new research and new testing that are coming out that we discussed, and it's definitely something you'd want to know about if you suspect endometriosis. Today's episode is going to be a little different because it's going to be a lot more personal. Rachel, who is the lead clinician here at The Funk’tional Nutritionist, she's here with me again, and she's going to share her own story with endometriosis, her own experience, and her own journey, let's say. So Rachel has stage 4 deep infiltrating endo (DIE). It is one of the more severe and invasive forms of this condition, and she's going to walk us through what that actually looks like for her, from her first symptoms all the way to diagnosis to where she's at now. And our hope is that by Rachel sharing her story, it will help you guys, our listeners, navigate your own journey with this. So definitely feel free and be sure to forward this episode to anyone you know who could benefit from it.
We're really just trying to get the education out there, make you feel like you have resources and support at your fingertips. So last week we talked about how on average it can take 7 to 10 years to receive an endometriosis diagnosis. And in your case, Rachel, that was for sure true.
Rachel Heintz:
Definitely. I feel like part of the reason why there's such a diagnostic delay with endometriosis is because endo is so difficult to detect on imaging. Oftentimes painful periods get written off as being part of a woman. We do know that painful periods are not normal. My periods were debilitating when I came off of birth control around 26 years old. And, at that point in time, I was working at an in-person medical clinic and I remember needing to go and lay down in the dark, lights turned off medical exam rooms on my lunch break because I would get so lightheaded from the pain I feel like I was going to pass out. And, at the same time, this was the start of my functional medicine journey with my health but also my career because I was working at a functional medicine clinic. At the time.
And, a little bit of background, I began birth control around 18 years old to help with my acne. Again, this was before I had found functional medicine.
Erin Holt:
You go to your doctor and you're like, I have acne, this is a problem. They were like, here's birth control. Yeah.
Rachel Heintz:
And, I had been doing all the typical topicals prior to that too. I was going away to college and I was like, it's time. So, I did not start birth control because I had painful periods. And, I was on birth control for 7-ish years, 18 to 26-ish years old. And if I'm being honest, I feel like being on birth control during that time was probably masking a lot of my endo symptoms as things were getting progressively worse.
Erin Holt:
Why do you say that they were masking your symptoms rather than, like, solving the problem?
Rachel Heintz:
So when we're taking— and I should clarify, I'm not pro or against birth control. It can be life-changing for so many women. When we're taking birth control and we're taking in synthetic forms of hormones, we're basically shutting off our own hormones and in a sense, like, masking them. So we're not really addressing underlying causes or root causes when we take that approach. And again, that has to be the approach for some women and it can be life-saving, but for many people, it's a little bit of a band-aid. And it's kind of like, okay, so I went on birth control for acne, I came off of it, and I got terrible acne. My acne came back with a vengeance basically.
Like, it didn't address the acne. You know what I mean?
Erin Holt:
Didn't make it go away. It just like made it go away for a little bit of time, which is, hey, like, that might be so great for some people to just not have to deal with it. But then I guess what I'm hearing is that like the stuff comes rip-roaring back as soon as you discontinue the birth control.
Rachel Heintz:
Definitely. And a little bit more background. So I was on birth control. I started college. I went to college in San Luis Obispo, California, and this area is just notorious for allergies being bad. And I remember specifically my sophomore year of college, I was maybe 20, my allergies became severe. And I kind of dismissed these symptoms because everyone around me is like, yeah, my allergies are bad. Mine were severe.
Mine were terrible. By the time I graduated at 22, I was taking 8 Zyrtec a day. This was advised by a doctor too. This was not me going rogue.
Erin Holt:
Whoa!
Rachel Heintz:
I was taking 8 Zyrtec a day. I was taking Flonase multiple times a day. I had a prescription steroid eyedropper, and I had prescription steroid cream for eczema. On my arms too.
Erin Holt:
Oh my God, you poor thing. That's so intense. Do you think that your allergies were clinically significant as it relates to your endometrium cyst?
Rachel Heintz:
I personally believe that they are because we know there's a really big histamine, mast cell, estrogen, endometriosis connection. And again, we'll be diving into the mast cell endo connection in more detail later on in this series, but My Cliff Notes version is when estrogen levels rise, histamine levels rise. And, as histamine levels rise, estrogen rises. It's kind of like chicken or the egg. And, we also know that endometriosis can be driven by and exacerbated by estrogen. And, mast cells, they're part of your immune system. They're the part of your immune system that produces histamines. And, endometriosis lesions and endometriosis tissue, it contains its own mast cells and it produces its own estrogen and it produces its own histamine.
So, it's kind of like, like you said, like it's almost chicken or the egg cycle. More histamines, more estrogens, all of that going on.
Erin Holt:
So for somebody that has a lot of endometriosis lesions and tissue overgrowth, are they going to be even more mast cells and even more histamine?
Rachel Heintz:
Yeah, most likely. It's really, really common for us to see women with endometriosis having allergies or histamine-related issues. And in hindsight, looking back, I did not know at the time, but at the time we were definitely living in this moldy apartment. And that was around the same time that my allergies started exploding. We didn't know any better, but I remember during the winter months, our beds were backed up to this wall and you would like touch the wall and it was like dewy and wet in the winter months. And years later on my functional medicine journey, I completed a mycotox profile and so many of the mycotoxins tested positive. And I'm like, there's no doubt in my mind that, that house was like the start of it. And kind of bringing it all together, mold is a big mast cell activator, a big burden to the immune system.
It can make those mast cells angry, they can start to produce a lot of those histamines. And yeah, I think that's why my allergies just exploded during college.
Erin Holt:
In our last episode, you talked about when you're addressing painful periods and/or endometriosis, one of the things that you're always thinking about is liver burden and toxic exposure. So this would be an example of a toxicant that you were for sure exposed to with your wet walls.
We lived in like our first house, like where we had Hattie, it was right across the street from the beach. And so it just— beach houses get like kind of like dank, you know, just like that sea wet air. And when we moved out, I like rolled up because it was all hardwood floors, but I rolled up carpets that we had, or like the throw rugs, and they had like mold underneath them, like mildew.
Rachel Heintz:
Yeah.
Erin Holt:
Like, ew. Okay. So in functional medicine, timelines are so big. It is really how we think about things clinically when we're starting to piece together the clues that is somebody's health story. We're always kind of asking, okay, when this happened, what else was happening? When this started, when these symptoms popped up, what else was going on in your life? So You're always using your client's timeline as an investigative tool. So can you share a little bit more about what your timeline looks like with all of this going on?
Rachel Heintz:
Definitely. So allergy issues, they were happening in college. Fast forward to 2018-ish, I began working at a functional medicine clinic, and that's when I really started to become aware that my allergy issues were not normal. This clinic was big on elimination diets, so I did one myself. And I ran a functional medicine workup on myself as well. So I did the elimination diet. I identified issues with corn and then maybe gluten. So I wasn't sure.
I ran a Wheat Zoomer on myself and this confirmed that I had a gluten sensitivity and a leaky gut. I ran some blood work. I don't remember anything clinically significant coming back on that, maybe low vitamin D. And then I ran a stool test and I tested positive for H. pylori, dysbiosis, and low secretory IgA. I improved so significantly with this workup, it was kind of crazy. Like, within 4 months, I was off of both of my prescription steroids. I was off of my Zyrtec, like the 8 a day.
I was maybe taking 1 or 2 a day on an as-needed basis a few times a month.
Erin Holt:
So wait, you took out the big food triggers, you put yourself on presumably a gut protocol to clear up the overgrowths?
Rachel Heintz:
Yeah.
Erin Holt:
Probably supported that secretory IgA and immune health with, I don't know, maybe like vitamin A, vitamin D, maybe some immunoglobulins.
Rachel:
Yeah.
Erin Holt
Okay. And those things combined got you so much better with your allergies and bloating within 4 months?
Rachel:
Yeah.
Erin Holt:
Wild. That's so cool.
Rachel Heintz:
Maybe it was 5 months. You know what I mean? It was like so significant. It was so crazy. And it's funny too, I used to do this thing all the time, like the scratching of my throat, but it's almost like this internal itch where you almost sound like you're like, Oinking like a pig when you do it.
Erin Holt:
I know what you're talking about.
Rachel Heintz:
I used to do that all the time in college. And I reconnected with a friend post-grad, and we were eating. It was like our first meal reconnecting. And like my meal, it came with stuff on it that I couldn't eat, like corn strips or something. I didn't mention the corn on the menu. And she sees me like picking the tortilla strips off of my salad, and she's like, why are you doing that? I was like, I have food sensitivities. All my allergies went away. Do you remember how I used to do that like thing with my throat? And she's like, yeah, it was It was so gross.
I was like, I don't do it anymore.
Erin Holt:
It's like, what's the Christmas movie? Show me how the piggies eat. That's how it was eating with you.
Rachel Heintz:
Yeah, even my friends in college, they just like knew how bad my allergies were. It was— I was known as the allergy girl.
Erin Holt:
Oh my God.
Rachel Heintz:
I know. So super amazing. Changed my diet, cleaned up my gut, things improved so significantly. And the next year, because I was working on my health, I chose to come off of the pill again. My allergies at this point in time were so much better. I wasn't taking anything for my allergies daily. But then I come off the pill, and my hormones come back online. And this is where I had these debilitating periods, terrible cramping, heavy bleeding.
I don't remember how long my periods were. I would have some spotting before my period started. And then 4 to 5 months after I came off the pill, I had awful, awful acne as my hormones rebounded.
Erin Holt:
How old were you at this point?
Rachel Heintz:
Hmm, 28, maybe.
Erin Holt:
Oh, so you're like, cool, no, like adult acne.
Rachel Heintz:
I know, yeah, it was bad. Maybe 27, 26, 27, maybe adult acne though, so bad. So at the time I didn't know I had endo, but I was doing so much liver support, right? I'm taking all these liver supportive supplements, I'm focusing on liver loving foods with my nutrition. Again, because acne, we think about wanting to support the liver, thinking about hormone metabolism and detox, we wanna support the liver. I started NAC and acetylcysteine, which is great for acne, but it's also great for endometriosis. So again, just like kind of unintentionally supporting myself. I got on a prenatal to fill in any nutrient deficiencies that were maybe caused by the pill. I was gluten-free, I was balancing my blood sugar, I was eating mostly home-cooked meals.
Like, I am a dietitian, so I feel like I had the nutrition really dialed in. And then at that point in time, I was like, okay, let me run a Dutch test on myself. And the Dutch test showed great progesterone, high cortisol. I was a stressed gal and I had a ton of estrogen. I was super estrogen dominant and I'm not a great methyl eater. So, I had high estrogen levels, but then I also wasn't clearing it and I wasn't detoxifying it really well. And that's a hallmark sign that we can see in gals with endometriosis too.
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Erin Holt:
You work with a lot of endo clients and a lot of Dutch tests, which shows us whether or not this methylation is working well specifically for estrogen, right? If you had to put a percentage to it, what percent of your endo clients do you see this low methylation activity?
Rachel Heintz:
Like 70% or more.
Erin Holt:
Wow. So a lot of them.
Rachel Heintz:
Yeah, a lot of them. And that's the phase 2 estrogen detoxification pathway, right? There's also the phase 1 metabolites and not always, sometimes in gals with endo, we can see that their bodies genetically are preferring a pathway that is more proliferative. Proliferation, it's like when things grow, basically. So lots of liver support, NAC can help with this too. Not just, it's not just like take NAC and everything gets better, but that can be a piece of the puzzle as well.
Erin Holt:
And so though, in case you've ever done a DUTCH test or you're a practitioner listening to this, that would be like the blue pie chart on the DUTCH test, right? 16-OH pathway tends to be more build proliferative.
And it's not - I always like to say this because it's not always bad. You know, the 4-OH is the one that we want to be a little bit like skeptical about and really be kind of hawk-eyed with that one. 16-OH isn't always bad unless you have a lot of estrogen build symptoms, which obviously folks with endometriosis would see. So how was your phase 1?
Rachel Heintz:
Fine.
Erin Holt:
So it was really just the methylation piece for you.
Rachel Heintz:
Yeah, methylation. So I wasn't like getting estrogen out of my body effectively. And also thinking about how many years of histamine issues I was dealing with. I think all those histamines and then all those mast cells in the endometriosis lesions, they were probably pumping out all this histamine and then also contributing to my high estrogen levels too.
Erin Holt:
So it's very multifactorial, right? There's a lot of moving pieces and parts, and it's different for everybody too. I think last episode we talked about how it can be — it's number one, it's a condition that is impacted by and also impacts a lot of different systems in the body. So it's tricky in that regard. But also, everybody's endo looks different, right? Everybody has sort of different contributing factors. And so that is one of the benefits of running the labs that Rachel is talking about, because it helps you kind of laser focus in, okay, like, what are my contributing factors?
Rachel Heintz:
Definitely. So in addition to the DUTCH test, I ran a repeat GI map because we know birth control can affect your microbiome. I was like, okay, I did my washout period, I want to check in, run a repeat test. And then that's the thing, I treated my gut, I treated my hormones per the DUTCH Test, and treatment helped so, so much with my hormonal symptoms.
I'm not going to pretend like, oh, 1 month later everything was better. I think it took like, you know, 4 to 6 months to really see significant changes. But my periods became less intense, they became manageable. Like, I was not laying down feeling like I was gonna get, you know, I was getting lightheaded, you know, seeing flashing things in my vision, needing to lay down in the medical exam room.
Erin Holt:
So at this time, were you working with anyone else, or were you just kind of like your sole care provider? Like, you were treating yourself?
Rachel Heintz:
At the time, so I worked at this functional medicine clinic. I worked alongside many healthcare providers that knew what was going on with my health and my symptoms. I primarily treated myself, but we would all take a look at each other's labs. I worked alongside nurse practitioners. One of them was an OB-GYN. I worked alongside MDs. None of us really suspected endometriosis. It was never really a conversation that was had.
And I personally never really suspected endo because my painful periods, they just responded so well to the work that I was doing with functional medicine. I didn't have cyclical pain in other parts of my body. I never had pain with bowel movements, urination, or intercourse. I never had like the major 6-month pregnant endo belly, the butt lightning, butt zaps, none of that.
Erin Holt:
No butt lightning for you?
Rachel Heintz:
No.
Erin Holt:
I think that part is kind of wild and also such a nod to functional medicine and how well it can work and how Changing your diet, changing your lifestyle, even some supplemental strategies can really help so much, and it kept you out of pain for as long as it did. That's pretty wild.
Rachel Heintz:
I know many women who struggle with painful periods and endo, they'll talk to their OB-GYNs or they'll talk with their doctors and they'll be told go back on the pill. I can't say that this was my experience. I can't say that I was ever told it's just IBS, it's just anxiety. Again, Looking back, a big part of my endo, I believe, was driven by mast cell and histamine-related issues. And I really feel like as my allergies got more under control, my inflammation got under more control, my periods also became so much better. And I feel like every single treatment that I brought in moved the needle for me one way or another, whether I was treating my gut, supporting my hormones, addressing deficiencies, detox worked. It all just helped how I felt overall. And at some point in time, I ran that mold profile, I did detox work, I felt good.
And I sustained this overall.
Erin Holt:
Yeah. And I mean, I've known you now for 4 years, 5 years, 6 years, a long, like a good chunk of time, good handful of years. And never once did I ever consider you somebody with health issues or like somebody with a chronic condition or like I knew you had allergies sometimes, but like, you never presented that way. So I think that that's kind of worth noting. So how did we get from there to cut to now we are recording this and you're 2 months post-op from excision surgery for endo. Like, what happened in between those 2 places?
Rachel Heintz:
So fast forward a year or 2 later, we went to Fiji for our honeymoon, and on the flight back home, we ate plane food. And shortly after, like the next day, I started having diarrhea, and I just assumed it's food poisoning from the plane food that I ate, right? And I remember around the same time that the diarrhea started, like a few hours later, my period started, and it was the most intense amount of bleeding I've ever had. I was bleeding through tampons middle of the night, like every hour, 2 hours, lots of cramps.
Erin Holt:
Were you scared?
Rachel Heintz:
I don't even know. I was in Tahoe. Like, we went straight from our honeymoon to a trip to Tahoe with friends, and I was like, I have diarrhea, I've got to take Imodium so I can spend the day on the boat, you know? So, and that's the thing, it was like Yeah. So it was like 24 hours of this really intense bleeding, and then we had a boat day and things were fine. So I, again, I originally associated this intense cramping and this intense period with like, I thought it was more food poisoning, but in hindsight, I'm like, oh, maybe this was an endometrioma rupturing or a cyst rupturing. And we later found out I had endo like all over my GI tract. So that's probably why I was having the diarrhea more than anything. I share all of this because this crazy diarrhea bleeding episode was the start of me experiencing bleeding anywhere from 3 to 6 days before my period started most cycles.
And looking back, I now know this bleeding that I had, this spotting before my period, it was caused by endometriosis in the vaginal cavity too.
Erin Holt:
What do you think set it off? Like, you were doing fine, fine, fine, fine, fine. Do you think that there was a trigger or an impetus for all of this, or your body was just—
Rachel Heintz:
Maybe it— my body was just like over it. I don't know.
Erin Holt
We don't, we don't necessarily know.
Rachel Heintz:
And I do remember when I collected my very first Dutch. So you time out your Dutch and you collect it 5 to 7 days after you ovulate, so cycle day 19 to 21. My very first Dutch post-pill, I remember I collected my Dutch and the next day I started spotting. but it didn't last for 7 days before my period. So I'm almost wondering back then, was there even this endometriosis in the vaginal cavity that was spotting and bleeding? I'm not totally sure, right? This is all theoretical and hypothetical. But so after this food poisoning episode, I'm like, well, I gotta fix myself up. And I ran some more labs on myself. I had a nurse practitioner colleague, you know, support me with treatment.
We were kind of co-treating me. I tested positive for SIBO. This is common with endo. I didn't know I had endo at the time, again, GI map, I had some overgrowths. Again, it made sense. I thought it was food poisoning, maybe it still was. My Dutch test still showed estrogen dominance, not as intense. I treated these findings, I felt better overall, gut symptoms were decent, allergies were still really well controlled, but the spotting persisted.
And I ran some repeat labs after this treatment had been completed, and it was like, my gut was clear, my estrogen was no longer dominant, progesterone was optimal. And again, I was feeling good. So I felt as though my periods, for the most part, were well managed. I would occasionally have some cramping or some bloating. It was never severe, but I will say I was always comparing the pain that I had and what I was experiencing to that severe post-pill pain, almost like, oh, it's not that bad, because remember how bad it was 6 years ago?
Erin Holt:
You were almost minimizing your pain.
Rachel Heintz:
Yeah, exactly.
Wasn't affecting my work. My husband's also like, you have a high pain tolerance. I'm like, okay, maybe I do. My mom thinks our side of the family has a high pain tolerance. Maybe that's part of it. But again, just always comparing it back to how severe it had been before. I shared this with my OB-GYN. I was like, hey, I'm still having this spotting.
She, on a routine exam, was like, I see something, and she biopsied it. And I remember she took the biopsy and we hadn't even gotten the results back, and I remember just thinking to myself, like, I wonder if I have endo. And it came back positive. So I was diagnosed with endo in a really obscure way because you can only formally diagnose endo by taking a biopsy, sending it to the lab. That's exactly what they did. It was just from my vagina, basically, instead of going in surgically is how they found it.
Erin Holt:
Oh, that's so wild.
Rachel Heintz:
I know. So when I got these results back from my OB-GYN, she sent it through the messaging portal, and I remember her saying, wow, I've never seen endometriosis in this location before. And that, you know, should have been my first, like, red flag or sign to maybe get another opinion. She recommended a handful of transvaginal ultrasounds, so they do an ultrasound internally and externally. I completed about 4 over a 6-month period, and a cyst was identified on my imaging, but I later found out from my surgeon this was an endometrioma.
Erin Holt:
Can you define that for people?
Rachel Heintz:
Yes, so an endometrioma is basically endometriosis on the ovary specifically, like a cluster of endo basically. It's sometimes— they can look almost like chocolate cysts basically. And this showed up every single time that I had imaging. And I will say the radiologists that were reading my images, they weren't endo experts, so I understand how that could have been missed or slipped through the cracks. My OB-GYN, when I asked her, I was like, This is bothering me. I'm spotting all the time for days on end before my period starts. Can we remove this endometriosis? Can I get surgery for it in general? Right? Like, can we remove the endo from the vagina, but then can I also move forward with the laparoscopic surgery? And she was saying it's too risky to move forwards with surgery because it was the back wall of the vagina. It runs really close to the rectum.
She was like, if we remove that, it's just too high risk. Like, there could be risk of injury to your digestive tract too. And she was like, endo usually grows back anyways. Birth control's your only option. So it was like, let's just keep doing ultrasounds and let's put you on birth control and just monitor. So yeah.
Erin Holt:
Let me ask you this. Where was your, like, mindset, emotional state with all of this? Because I will say, for folks that don't know Rachel, she's a very stoic person, right? So you're, you're very unflappable, I think is a pretty good word for you. You're cool, calm, collected. That's kind of your demeanor and your disposition. You don't really emote a ton, like over, you know, like you're not a very reactive person. So where was your headspace at for all of this to be told, like, you have this thing going on, there's nothing we can do for it because the treatment is like too risky? Like, where was your headspace with that? To me, that would— I would be very scared and panic.
Rachel Heintz:
I wasn't. I don't know. I think maybe because in my mind I was like, well, I see women with endo, I treat women with endo. I helped them get improvements in their symptoms. My periods got so much better, so I was just like, okay, like, it sucked to be like, oh, there's nothing we can do, let's just monitor.
Erin Holt:
Did you consider going on the pill at any point?
Rachel Heintz:
I didn't, because I, again, I just didn't feel like it was addressing the underlying cause.
Erin Holt:
Yeah.
Rachel Heintz:
Right? I didn't go on the pill, so I reduced my alcohol intake. I started supplementing with NAC consistently. I dealt with this, like, pre-period spotting for over 2 years. I ran labs to make sure that things were still optimized, right? Like, my estrogen was normal, my SIBO was negative, my stool testing was fine. I basically like sat on that endo diagnosis for 2 and a half years. And again, sometimes I would have painful periods, they weren't debilitating. I would take magnesium glycinate, sometimes CBD, sometimes cramp bark, sometimes a heating pad. And like, in hindsight, right, I didn't know I had endo at that point in time though, so I'm like, okay, this is why I need all these things.
But then sometimes I would randomly get like the equivalent of like a hot flash at my period was beginning. And again, I kept coming back to and comparing my pain to that pain that I experienced when I first came off of birth control, and I think that was pretty classic endo pain.
Hey guys, if you've been following me for a while or you've been listening to the podcast, you probably already know that when it comes to your health, there's more to the story than what you've been told. A lot of you guys are really smart. You've tried things, you've run labs, you've worked with practitioners, and you're still sitting here like, why doesn't my body feel better yet? That's actually the exact person we work with inside our one-to-one care. You are not doing anything wrong. It's just that no one has really put the full picture together for you. Inside our one-to-one functional care method, we look at everything together— your gut, your hormones, your nutrient status, your nervous system, your history. We don't see them as separate issues, but as one connected story, because it is. And then we help you actually work through that with real support, ongoing guidance, adjustments, and helping you understand what your body is doing and why. Our goal isn't to just help you feel a little bit better for a few months. It's to actually create something that lasts. We don't go for 90% better. We keep it 100%. So if you're dealing with chronic symptoms, gut issues, hormone imbalances, autoimmunity, and you feel like you've tried everything, I really do get it. And at the same time, I'll say this. I know. When we work with someone like you, it's very rare that we don't find what's missing because that's what we do. We're a team of highly skilled practitioners working on complex cases every single day. You're not doing this alone. You have ongoing support, messaging access to your practitioner, monthly appointments where we're looking at your progress, your labs, what's working and what's not, and actually adjusting those things in real time so we can find what works for your You can apply to work with us through the link in the show notes, and our team will take a look and guide you from there.
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Erin Holt:
And so now let's cut to this year, 2026.
Rachel Heintz:
So the reason I finally moved forward with surgery is there's definitely like a really frustrating and emotional component when you're bleeding for like almost 10 days a month. And when I was spotting, it's not like all this blood was coming out, but it was to the point where it was like if I didn't use something, I was like ruining my underwear. And it's not fun to like work out with that or anything.
Erin Holt:
It's a nuisance.
Rachel Heintz:
Yeah, it's annoying. And then the good news, again, I knew that the spotting was because of endometriosis. Like, I had an explanation, I had an answer for it. I knew it wasn't cancer. You know, I had run all these labs. I was like, okay, everything else is looking good. I was just very frustrated. It's like, okay, this is— there's no treatment for this.
And it was at the start of this year, I was like, there needs to be something else. And I, I had like started to look into surgeons and didn't move forward with it. And a girl on social media, she lives local to me, she shared her experience with endo, and that's actually what motivated me to get another opinion. And she went to the same surgeon that I did.
Erin Holt:
And I think that's so cool. And I want to just shout out social media for a second because we know it's bad, right? For the most part, it's bad, but sometimes it's really, really, really good when it's able to connect people to real solutions. And honestly, that's why Rachel and I wanted to record this podcast. This was Rachel's idea, of course. to share her story. And this is, is why it's like, you know, I think back to the origin of this podcast and how much I used to talk about my own experience with autoimmunity and like how I got the diagnosis and what I did. And in hearing me talk about it, literally hundreds of people were able to go figure out their own stuff with autoimmunity. And so we're just hoping that in sharing Rachel's whole story, you might hear some parts that connect or click or give you some ideas or some next steps or options too.
So. Thanks for being here, Rachel, and sharing your story. Of course.
Rachel Heintz:
I know, and, and again, to echo what you said, hopefully hearing this inspires at least one woman who's been on the fence about getting a second opinion or a third opinion to do so. And it's not always the easiest to, like, talk about your health issues by any means, but we want to get the word out. And also, if I had listened to my doctor and I didn't seek out another opinion, I can't imagine what my fertility journey would eventually look like, or my kidney health, or my appendix, or my gut health. And this is a big learning experience for me, and I will continue to preach it. Not all OB-GYNs are endometriosis experts as well. And ultimately, I chose to move forwards with surgery because no amount of supplements or dietary changes can remove the endo lesions from your body.
Erin Holt:
Which is a really important thing that I want people to hear, because you are a functional medicine provider who has built your whole career around nutrition, root-cause medicine, root-cause approach, functional medicine, and you are saying this, you did all of the right things. You have all of the resources at your disposal in order to do all of the right things, and you still chose surgery. And I think that's so important for people to hear this destigmatization of surgery, because I know we've talked about this before, but especially on our side of the fence, the functional medicine side of the fence, There can be this idea where it's like, you're not working hard enough, you're not trying hard enough if you get surgery, almost like surgery is like a failing on your part. And that is like, super, super, super, super, super not true.
Rachel Heintz:
I agree. No, and I agree completely. And so I met with my surgeon, I met with him for a pre-op appointment. And he said my endo was severe. So even just upon exam. So he started with a transvaginal ultrasound. He's like, endo's here, here, and here. And then he did an exam like with his hands and basically my rectovaginal space, so like the space between your vagina and your rectum, like your intestines, was just like full of endo.
And it was so bad he had another doctor in his office come and examine me. He was like, it's so bad. This is textbook. I don't even know how this was missed. And so I did later learn so I had endo growing technically outside of my body, in the vagina and on the cervix. And I guess that really did speak into the severity of the endometriosis too, because normally it grows internally on the organs, not externally in the vagina. And so when that was found 2 and a half years ago, I should have essentially immediately been scheduled for surgery.
Erin Holt:
Like, the doc that found it should have been like, red flag, we need to get scheduled for surgery.
Rachel Heintz:
Taken care of right away. And so, like I mentioned, he found an ovarian endometrioma. And per Jolene Brighton, she is a— I don't know if she's a naturopath, she's a functional medicine doc. She has endometriosis as well, and she says an ovarian endometrioma suggests that you have stage 4 endometriosis until proven otherwise, usually because it means the disease is pretty severe. And, at this pre-op appointment, my surgeon said to me he sees endometriosis this bad maybe one time a year. At the end of that consult, they had shared with me they wanted me to basically go into medical menopause prior to surgery, but then they talked about all the side effects and how unpleasant it would be and hot flashes and all of these things. I was like, I would not like to move forwards with that. And one thing I want to highlight is that usually people don't know if they have endo until they wake up from surgery.
And I think it's such a big deal that my surgeon is able to identify endo on imaging Mm-hmm. Prior to opening somebody up, prior to scheduling them for surgery. And like I mentioned, he pioneered laparoscopic surgery. He's been practicing for years. Not many doctors can do this. And I think my situation was unique. I know it was because I went to him knowing that I had endometriosis because of that vaginal biopsy. But even then, it was really reassuring to hear from my surgeon that he was like, yeah, you have endometriosis everywhere.
Erin Holt:
I know your surgeon's name in the last episode. Can you just share his name on this one just in case somebody hasn't caught the last one yet?
Rachel Heintz:
Cameron Najat. He's based in Woodside, California, and he does have brothers in Atlanta or in New York, but I recommend Dr. Cameron because he is my surgeon.
Erin Holt:
Hudson also. They're not really hunters.
Rachel Heintz:
No, they're surgeons too. He's got a couple brothers.
Erin Holt:
You might— I don't know, look them up.
Rachel Heintz:
They're all Doctors.
Erin Holt:
Yes.
Rachel Heintz:
I have referred a colleague to him, and she saw him for an appointment. He actually turned the ultrasound screen towards her during her appointment, pointed out the endometriosis everywhere on her scans during her imaging. And she has also had multiple ultrasounds. It was never detected, and he was like, right away, it's everywhere. So again, a lot of gals don't know if they have endo until they wake up from surgery, I think it's a big deal that he's able to catch it ahead of time. And it was crazy because once I was scheduled for surgery, I was chatting with friends about it. And one of my friends from high school, she was like, yeah, I remember your periods were bad in high school. Like, we couldn't share tampons because I guess I used supers and she couldn't use those.
And a friend from college was like, oh yeah, I remember your periods being bad and your period pain being a thing. And again, I, I don't really remember these being problematic times, but maybe Again, because I was just comparing these symptoms to how severe things were when I came off of the pill. I've said that like 5 times now.
Erin Holt:
Yeah, you're kind of doing your like hindsight being 20/20. And you're like, I know, there were like clues. I know the way.
Rachel Heintz:
Yeah. Okay.
Erin Holt:
So what were the surgical findings? Because I think you and I were both pretty shocked to see that post-op report. We're like, oh, hot damn, there were some things happening.
Rachel Heintz:
And I should clarify, I did have laparoscopic endometriosis excision surgery, and I had a partial vaginectomy. So they removed that part of the vagina where the endometriosis was, and like parts of the cervix too. It was kind of crazy. So I woke up from surgery, and my surgeon said if stage 5 endo existed, that would be me. Normally they advise you to follow a clear liquid diet for a day and then advance to fulls and soft foods, and he was like, you need to do that for an entire week because it was all over my digestive tract. So stage 4 endo, stage 4 adenomyosis, a frozen pelvis, which just means like all of your pelvic organs are like fused together and like stuck together. Endometriosis was over half my bowels, like I mentioned. It was on my diaphragm, so I do have thoracic or had thoracic endo.
My small bowel was stuck to my uterus. I had severe bowel adhesions, again, 'cause all that endo on my bowels for who knows how long just creating all this inflammation. I had an endocyst on one of my tubes. And then this is just a quote from the surgical report. The endometriosis was fibrotic and cement-like. And then the procedure was extremely tedious and complicated associated with significant oozing all during the procedure. Oh my gosh. the procedure.
Rachel Heintz:
Fun. And that was the line I liked kept reading over and over again. My surgery was scheduled for 3 hours and I was in there for 4 and a half, so it does make sense. And my husband Taylor was like, everyone kept texting me like, is she out? And he's like, I'm worried too, stop texting me. But just because there was so much. Again, so many findings. A big, big finding is that I have an intussuscepted appendix. So there was so much endo on my appendix that it's like pushed inside of my bowels.
My surgeon had prepared me prior to surgery. He was like, yeah, a lot of women with endo have it on their appendix. We'll remove it if we get in there and we see it. But my appendix was just squished inside my bowels. So if this was left untreated, this could lead to a bowel obstruction, a perforation, sepsis, infection— kind of crazy. Endo was on my ureters, which basically could lead to kidney loss if it was not treated. And I also had so many findings that could cause infertility. So again, just very glad that I moved forwards with surgery because I had no idea all of this was going on.
Erin Holt:
And, you know, in the last episode we talked about why it's so important to understand what is like normal pain versus what is abnormal pain, normal periods versus abnormal periods, and I think this is an example of why women need to be armed and equipped with this information to be like, hey, something's a little off here, right? Like, I shouldn't be bleeding through tampons. Like, that's a sign that I should have been aware of. I mean, again, hindsight being 20/20, but this is part of the reason we want to get this information out. We're going to do a whole episode on what you did because you were so intentional about your pre-op care and your post-op care. And that's a question that we get a lot, like, how do I prepare myself for surgery and recover from surgery? So we'll do a whole episode on that. But like, let's just let people know before we close this out, how are you feeling now post-op?
Rachel Heintz:
Good. I'm about 10 weeks post-op at the time of this recording, and I feel like back to my old self, aside from like my core is very weak. That's okay. I do have a reduction in bloating immediately. I had one like Like, I was inflamed, I was swollen immediately post-op, but within a day or two, I was like, wow, my belly is so much smaller. I've had 2 periods since surgery. My period pain, it's different. It's almost just like a dull ache.
And I was chatting with a friend, she's like, maybe this is what periods are supposed to feel like for you. Great. Currently in my late luteal phase, like cycle day 24, 25, no spotting. I did have some spotting immediately post-op and like the second cycle after, but I was like, they cut so much out of me.
Erin Holt:
Right, right.
Rachel Heintz:
I wore disposable underwear for like a month, basically, 'cause I was—
Erin Holt:
After having a baby?
Rachel Heintz:
Yeah, basically.
Erin Holt:
It's gonna be a little weird down there for a minute.
Erin Holt:
Yeah.
Rachel Heintz:
Histamine symptoms are even less, which is great. And recovery has just gone a lot more smoothly than I would've expected, especially considering the severity and how much they removed. By 2 weeks post-op, I was able to cook a little bit more. By 3 weeks, I could go for like 2-ish mile walks. 5 weeks, I started to do bar arms at home, like 2 to 3 pounds. I could wear like fitted jean shorts again around the 5-week mark just because the incisions were so sore. I went back to the gym at 6 weeks. I started pelvic floor PT at 7 weeks, and then I went to my first workout class last week, 9 weeks post-op.
So, things are going well.
Erin Holt:
Amazing. Do you feel— are you glad you did it?
Rachel Heintz:
Yeah. And, I had my post-op appointment A week or two ago, and it was just crazy speaking with my surgeon and getting his opinion on like how problematic things could have been if, if left untreated too.
Erin Holt:
So we hope, like we said 100 times, that this helps you in some way, shape, or form. Definitely send this episode to somebody else who might need to hear this story. And functional medicine can be such an adjunct therapy. I mean, whether or not you choose to have surgery, whether you are before surgery, whether you are after surgery, wherever you are in your endometrial journey, functional medicine can really have a huge impact. And so if that's something that you're looking to do, fill out an application to work with our team. Rachel will review your application and get back to you and let you know whether or not you're a good fit for our practice. And then come back next episode because we're going to be talking about what to do if you are newly diagnosed with endometriosis. What do you do and where do you start? Now what?
Thanks for being here, Rachel. Thanks so much for sharing your story with us.
Rachel Heintz:
Thanks for having me.
Thanks for joining me for this episode of The Funk’tional Nutrition Podcast. Please keep in mind this podcast is created for educational purposes only and should never be used as a replacement for medical diagnosis or treatment. If you got something from today's show, don't forget, subscribe, leave a review, share with a friend, and keep coming back for more.